Home, at last

I am back in my apartment tonight. Yay!

Around 1pm, my nurse said that I was going home today. She handed me discharge papers and left the room. I saw the my anti-anxiety drugs and sleeping pills were not on the drug list, so I called her back and explained the situation. Nurse V left and returned an hour later with a revised discharge form and printed out prescriptions. When she handed me the scripts, I asked her about the prescriptions for the 7 other drugs on my drug list. Nurse V shrugged and said I had to call my doctor.

I called Dr. Lackman's answering service and left a message explaining the situation. He called me immediately and suggested that he call in the drugs. As I listed the drugs, he sounded increasingly angry that someone had not done their job. Of course, he couldn't legally call in any of my pain drugs. He asked me to have my nurse call him and said he would work on it.

When I hung up, I was extremely upset. My stomach hurt and I had an explosive tearful jag. I asked my nurse about pain drugs; she said I was overdue for the long acting OxyContin, but it took her another hour before she gave it to me.

Within an hour, an orthopedic resident came up to my room from the Emergency Room explaining that Dr. Lackman had sent him to straighten out the situation. He returned to my room a few minutes later with a stack of prescriptions. Apparently, they just needed to be printed out. I called the nurse coordinator and the patient-staff liaison to complain about the problems in getting discharged.

I finally left the hospital, about 6 hours after I was initially told I could. Jimmy drove me home in his pick-up truck. Ken met us at my place and they carried me upstairs in the wheelchair. Emily came over to help me calm down, while Jimmy and Ken got my prescriptions filled.

Overall, it was an exhausting day. I am glad I am home.


Needle Count:86

Answers to frequent ?s

Answers to the most frequently asked questions:

1. No, I am not sure when I am leaving the hospital, but we are just waiting to stabilize drugs. I am no longer on any IV medications.
2. No, we do not have a start date for chemo. We also don't have a definite list of chemo drugs or know frequency or duration of chemo. My oncologist is on vacation. I would guess that my treatment will wait for her return, but it may not.
3. I have not had genetic testing yet. It is not urgent, but we are definitely doing it.

Needle Count: 84

Calming down

I had a tough night through early afternoon. I seemed to burst into tears at the smallest gesture. I felt angry at the tiniest provocation. I felt like I was snapping at my brother and at friends. Then, my gorgeous friend Elizabeth visited with me and calmed me down sort of by absorbing all of my energies. I have felt so much better since.

I have used my walker to get myself to and from the bathroom. Twice! The second time I was completely fatigued; it was like I had run up 2 or 3 flights of stairs. The nurse said it was ok because I could make conversation while I caught my breath. I felt proud for using the walker, but shocked at my weakness. I will be stronger. Every day I will have more endurance.

This evening, Dr. Thomas (who coordinates my treatment team) suggested that I use my brand new wheelchair to leave my hospital room. My brother brought me to the Contemplative Garden. I loved being outside, smelling lavender and lilacs, listening to water flowing over a stone wall. I felt calm and peaceful.

I also started the Lovanox, a needle I get twice a day in my belly to thin my blood.

Needle Count: 82

Plans

I will be starting chemo soon to shrink Sneaky the Sarcoma and the nodules in my lungs. Yes, biopsy results came back and preliminary findings say that the nodules are sarcoma.

The doctors would like to release me but are concerned about my living alone. My baby brother is staying at my house until next weekend. The rehab team is giving me a wheelchair to get around and will schedule s nurse visit every few days. After Jimmy leaves, someone else may come or I may stay at Ken's or Marcy's.

It is hard to process feeling of cancer spreading to my lungs while seriously considering how I will live. Doc strongly suggests that I assume I will not be able to walk for another 6 months. Bleh!

I am exhausted; painkillers and sleeping pills are kicking in.

Location:Dr Martin Luther King Blvd,Camden,United States

Needle Count: 80

Waiting

No, I still haven't heard about the results of the lung biopsy.
I know you are curious. Me, too.

Promise I will share when there is a plan!

Visitor Fatigue

My dear friends Janet and Jon visited me from Pittsburgh. It was fantastic to see them and catch up. Janet is a music therapist and I enjoy hearing her discuss her sessions with children on the autistic spectrum. About an hour after they arrived, my parents joined us, talking of Bunky's attempts at cuddles last night.  A few hours later, I was pleasantly surprised to see my friends Liberty and Monica.  We were a little short on chairs, but I enjoyed how everyone was getting along with each other, telling hilarious stories to get me to laugh.

After dinner, Ken arrived, also. I was so exhausted that the nurses were concerned, but everyone, besides Ken left. Honestly, I felt a little bad about not continuing to visit with my parents, but they insisted on heading out. I fell asleep fitfully after all the goodbyes, even though it was barely 7pm. I soon got some good rest.

One of my pain medications somehow makes me perceive sound as louder; I sometimes have trouble following conversation over the sound of my chewing. During these points of hypersensitivity, I tend to find loud voices painful or overwhelming. I also tend to take everything super literally, ver concretely and seem baffled by conversation that no one else finds confusing.

Please check-in with me before visiting. I sometimes meet with doctors, have tests (or recovery from tests), am in "extra" pain, or am already expecting visitors. I also struggle with sleep and have had ongoing nightmares, which can make me nappish all day. I genuinely enjoy connecting with friends and family. I feel so grateful that folks want to share their time with me. On the other hand, 7+ hours of visiting (and 7 visitors) might be too much for me.  I can sleep if I have 1 or 2 visitors, but I get too excited about connecting with folks if there are more. 

I had so much fun today. Thank you to everyone who visited today, during this hospitalization, and during other hospitalizations.  Thank you to everyone who visited after the surgeries, after chemotherapy sessions, and days of testing.

I love it when a plan comes together.

Today was Good.
Today was fun.
Tomorrow is another one.    Dr. Seuss


Maybe my day wasn't that fun, but sometimes I like to exaggerate. I got another sponge bath! My grandmother's sisters (and family matriarchs) visited with me for hours. My parents also drove down for the weekend and are staying in my apartment. It feels a little weird that they are there, but I am glad to see them.

Also, I had several meetings with doctors today, including Dr. Lackman, twice. We are waiting on results from  the lung biopsy, but have some vague plans for possible chemo, surgery, and radiation. He said Sneaky (my nickname for the sarcoma) is a (UPS) Undifferentiated Pleomorphic Sarcoma. It's wacky "undifferentiated" nature confused doctors about whether it was synovial or muscle in origin and possibly complicated diagnosis, it acted "cyst-y" and not "cancer-y".  Dr. Lackman emphasized getting my knee straight, too.

I came up with a knee straightening idea, based on mirror therapy in phantom limbb pain. When a person loses a limb, he or she may experience pain, cramping, etc. in that area even though the limb is missing because the associated parts of the brain are still functioning "as though" the limb was in place. The amputee places a mirror to see the reflected healthy limb in the location of the missing limb. The person exercises, stretches the healthy limb and the parts of the brain associated with the amputation are stimulated through the visual system. I might not be explaining it well, but there's some great YouTube videos on it.

Anyway, my theory is that since my leg has been stuck for a while, maybe the nerves associated with that area are a little confused about what should be happening. Maybe my Strong Right Leg and my Amazing Visual System can tutor the motor and sensation brain parts associated with my left leg. Besides, it really can't hurt.

Most relaxing day in weeks? Months?

I spent today re-reading my journal, watching bad television and feeling luxuriously relaxed. Besides an orthopedic resident who saw me around midnight, I have not seen any doctors nor had any tests. My body is in less pain than it has been since I was admitted to the hospital on Friday. Yay! I think it's because I haven't had to move too much. My nurses are very attentive and quick when I need support. Rounds are at 6 am and I will meet my team then.

My parents are coming to visit this weekend. Other folks have shared that they'd like to come, too. If you want to visit, that's great! Please check in with me first so that I don't overwhelm or exhaust myself and to make sure I am not in testing.

Love to everyone. Hooray for the doctors who figured out my pain drug regimen. It is easier for me to be hopeful when I am clean, in fresh clothes, pain free, and relaxed.

My, what a busy day!

This morning, two members of the physical therapy team assessed me at 6:45am. After that, I had a fairly constant stream of visitors for the next 5 hours. The nurse gave me a strong painkiller. Each member of my medical oncology team spoke with me individually about transferring to Cooper University Hospital for treatment by the renowned Dr. Lackman. The hospital chaplain visited with me for an hour; we had a lovely conversation about hope and joy. He reminded me of grandpa and I reminded him of his younger sister. Meanwhile, the nurses and nursing aides continued to check on me. The medical oncology team visited together and announced (again) that I would definitely be transferred to Cooper University Hospital (3 miles away in  lovely Camden) and that Dr. Lackman had committed to treating me. Yay! The nurse set about the process of transferring me.

I had not eaten or drank anything since Midnight Tuesday in preparation for the lung biopsy. Transportation got me to the CT area around 1:30; waiting for the biopsy team was my first break from everyone. It was blissful! Hospitals are terrible places to rest.  I cheerfully recognized one particularly calming nurse on the team from the last time the cyst was drained. Apparently they gave me a lot of sedatives, because I don't recall too much until I got back to my room. Athena, Susan (family counselor), Rachel & 2 year old Elsa, Monica, and Elizabeth visited with me as I devoured my lunch. I also had another flower bouquet. Yay!

The rest of the day  consisted of telling other people the transfer plans and waiting for a clean room at Cooper. My cousins Dino and James and Ken entertained me with stories as we waited for the ambulance. Ken trailed the ambulance to help me settle into my room while everyone else headed home. At Cooper, I have my own room and it has windows, lots more chairs, a big tv in front of the bed (instead of a tiny one slightly behind it). I think I am going to like it here. 

Needle Count: 78

Good news & bad news

I have to keep this brief for the pain, etc.

Good news:

• my brain is fine! There were no problems with the brain MRI. 

•   Lung nodules look the same from a month ago. 

• The orthopedic oncologist I am scheduled to see is world renowned.

• Doctors are increasing painkillers

Bad news:

•  The sarcoma in my leg is so large that it isn't clear from MRI where it ends.

•  I will be in hospital at least till Friday, possibly getting admitted to Cooper Hospital in NJ.

•  I have a fever.

•  I am in pain.

• The ct scan of my lungs was really tough. The dye IV burst and got stuck all over my hand.

• I lost 10 lbs since the beginning of August. I am having a very tough time eating, because of pain, drugs, and unappealing food.

Current plan:

• Continue pain management

• Go to radiation set up tomorrow

• Take an ambulance to ortho onc in nj on Friday.

If you want to "do  something":

I appreciate visitors and texts. Phone calls are trickier if I am out of it or busy with hospital people.

• Bring On the funny & distracting.

• Research orthopedic oncologists, particularly related to insurance, if possible.

• Come visit, or someone can work out a schedule for visits.

• Check in, support my caregivers, especially Athena, Ken, my parents and siblings.

Needle count: 77

Pain drugs and tests

First off, the MRI's last night went well. My nurse gave me morphine to tolerate the test and re-upped part way through. I was so glad that Athena and Ken waited for me so I could share the weird dreams I had during the tests. Hollace had come earlier and brought pretty yellow flowers.
The doctors took me off the morphine drip last night and gave me longer acting narcotics. I still woke up twice in pain, though. The nurses changed my various IVs. I had an anxiety attack this morning when the nursing assistant weighed me, as I lost 10 more pounds since the beginning of the month. I havent weighed this little since middle school. I know I haven't been eating well in the hospital, but I tend to be given pain drugs right before a meal. Also, neither pain nor morphine are helpful in eating this hospital food.


Today's plan: 

• possible CT scan of lungs ( or having the previous records accessed)


• lung biopsy. 


• Find out what MRI said


• Psych consult for anxiety


• Get prescriptions for pain control and blood thinners


• Meet with physical therapy folks


• Go home

Also this week's plan:

• Wednesday: radiation setup for breast cancer


• Thursday: chemo for sarcoma


• Friday: go to orthopedic oncologist

It is a lot. 

Location:Vine St,Philadelphia,United States

Current plan

I am on a lot of morphine now to control pain.

I will have an MRI on my knee to discern sarcoma and blood clot. Because last time ended with my hysterics. The doctor agreed to give me more morphine before the test. They are also going to MRI my brain to rule out cancer there and to explore nerve stuff, since my nerves are being weird.

I am still scheduled for radiation on Wednesday, Chemo on Thursday, and the ortho-oncogist Friday.

Please keep sending me good thoughts and energy.

Blood clot.

On Friday, Athena took me to Methodist Hospital to get an ultrasound of my legs to determine whether I had a blood clot. We got to the appointment at around 9:30 am. Sure enough, there was a blood clot. The ultrasound people sent me to the ER where they eventually gave me Percoset. The ER doctor recommended to go to Hahnemann Hospital, as that was where all my doctors were associated. We rode over in an ambulance around 5:30pm: a horribly long, famish-y, painful day in the ER

I was admitted and had to repeat the ultrasound. I was in a lot of pain and have been very sad about the news of the sarcoma. Luckily, I had people who love me come visit. My parents, Ken, Emily and Kevin, and Monica all helped me by just being there.

Last night, I barely slept due to pain, despite Percoset and morphine alternating every 2 hours.  I cried a lot and talked to my genius doctor cousin Stephanie who suggested getting a patch. I have also been given a PCA of morphine where I can press a button to get more.

At the moment, I am feeling 87%better Thani did this morning. I am still in pain, but I have hope now that I won't always be in pain.

Needle Count: 75.

Stitches out

Today I got my stitches out (from when Dr. Junkin took out the cyst). It felt uncomfortable, but it was okay. By the time I felt like I needed a break, I only had 1 stitch to go.  Also, I don't have to wear the immobilizer anymore. Yay!  Dr. Junkin wants me to see an orthopedic oncologist in New Jersey. He suggested that radiation might be more effective than chemo. I hope so. 

Otherwise, I had 3 very nice visits from different friends. I can't explain how helpful these visits are. I am so isolated, even in my own apartment. I will be starting physical therapy next week, also.

Today, I didn't cry at all. I may be overwhelmed and exhausted, but I can do this. Having cancer is hard, but each moment is something I can handle. Sure, it'd be so much more handle-able if I wasn't in pain, but I can't control that. I am taking a very short, minute-by-minute view of my life. I can pretty much accept or tolerate anything for a minute.

Tired and nauseous

I am recovering from yesterday's chemo. I am very nauseous and my leg really hurts. I can't get comfortable. Athena put on Monty Python and got me some egg drop soup for nourishment. I was scheduled for an ultrasound on my leg to check for blood clots, but rescheduled it because I was too nauseous. My orthopedic doctor called to make sure I knew about the sarcoma. He said it was sent to Mass General and had not been fully discerned. I have an appointment tomorrow  to get stitches out from the Baker's Cyst. I am excited to see the scar.

 I am so grief struck by this new medical adventure. I cry easily and at the smallest provocation. I am tired of having cancer and feeling sick. I am tired of not being able to walk or sit without pain. I miss walking around in my neighborhood and seeing friends. I regret that I didn't bike more last year, but I feel like I created enough awesome memories of fun times hiking in the woods, tubing down rivers, camping, biking, walking around my neighborhood, going to shows, dancing at parties, and just getting around to almost satisfy my mind. I haven't been able to focus on reading today, but maybe when the soup and drugs kick in, I will.

Cancer 3, Chemo #1

I am lounging with my sister following chemo today. I was in treatment from around 10:30 am until around 3pm.  I got very tired, but I had trouble resting because my leg hurt too much.

I have spent most of the last 24 hours crying on and off about this new experience and the return to chemo. The other parts of the day were spent staring off into space.

I don't have energy to share more.

Needle Count: 73

Sarcoma in my leg

Athena drove me from my parents' house to Philadelphia perfectly on time for my 3:15 appointment, even with our brief stop at Stewart's for a root beer float. Unfortunately, my oncologist was running behind and we waited almost 3 hours before we saw her. I was in pain. I skipped a dose of Percoset to be alert during our time.

Dr. Rubin explained that I had a sarcoma in the muscle of my leg. She wants to start chemo tomorrow. She said this cancer has nothing to do with the breast cancer either. I cried. I am overwhelmed and sad that I have to go through chemo again. I feel like my body is not being helpful. I am angry too. What if we explored this cyst more way back in the beginning?

We came back to my apartment and Bunky was so happy to see us. Emily came over to comfort me, while Athena made phone calls to let our family know.

Cancer 2 or 3

I have been reeling from yesterday's news.

We know so little about Lumpy II. The cancer cells could be bone, muscle, blood, or other tissue. It might be related to breast cancer or it's treatment.  It could be unrelated, but that just seems absurd to have to be diagnosed with cancer twice in 8 months.

There's a lot of differences this time. My doctor told me about the malignancy in person, but I wasn't waiting to find out my cancer status. I feel like I know that I have no idea what the rest of the year will be.

Back to my parents' house

I met with my orthopedic doctor this morning because of running fevers since the surgery on Friday. He undid all of the Ace Bandages on my leg: from thigh to toes. He also changed the bandages on the wound. My leg was covered in ugly bruises. Dr. Junkin said that I would need an ultrasound test to make sure that I didn't have a blood clot.

He had other news, too. Dr. Junkin said the the material from the cyst was still being studied by pathologists to discern exactly what Lumpy II was.  Dr. Junkin said that it was malignant and may be related to Lumpy or to breast cancer treatment, or be unrelated.

I know I am hiding this scary information, but I cannot absorb it right now. It's the second time this year that a doctor has told me that I have cancer cells in my body. I cried a little, but mostly I am completely exhausted.

Athena drove me back to our parents' house. The ride was rough because my leg had to be at a weird angle and her air conditioning did not work.

Home again!

Yesterday, I got to leave the hospital with Athena and go to my south Philly apartment.  I had done well in Pt: I walked down the hallway, up and down a flight of stairs (with a cane) and back to my room. Then, the PT got crutches, and I did the same thing again, only I didn't go as far up the steps.  It was awesome, especially given that I had difficulty walking to the hallway and back in my first PT a few days before.

Lumpy 2 was full of necrotic fat cells, cell debris, and blood clots. Eew! In the hospital I got 2 shots of blood thinners in my belly every day, to help prevent further blood clots. At home, I have to take aspirin twice a day.

I had an appointment at radiation oncology yesterday morning,also. Because that department is in the first floor of the same hospital, I thought someone could just give me a wheelchair to help me go. Apparently, that's not how it worked at all. My Radiationn Oncologist came up to my hospital room.  She and another doctor explained that my initial appointment would be 8/ 23 and that daily radiation would start a week later and last for 6 or 7 weeks.  Dr K said she had consulted with my oncologist and they would like me to get the nodules in my lung biopsied as soon as possible.

Day 2 in the hospital

Today I have been sleeping on and off all day. Like yesterday, I would fall asleep when I closed my eyes, but sometimes only for a few minutes. Last night, I had tremendous scary dreams, mostly about being stuck somewhere, because my legs wouldn't move.

This afternoon, they cut off the morphine supply and restarted me on Percocet. As long as I have something, I am good. I had physical therapy and occupational therapy come help me today. I used a walker to get from my bed to the hallway. I got dizzy, so we stopped. They helped me use the bathroom too before they left.they want me to be able to climb stairs and walk further before I leave.

I have also been running a fever (up to 102.1) today.  It didn't respond to Tylenol, at first, so I had to get a chest X-ray. It came down when we switched to Percocet, which has tylenol in it. I have less sensation in my foot than before surgery. Doc says it may be due to inflammation from surgery.

The orthopedic team just examined me (at 3:45am!) and said that the ace bandage wrap from my thigh to my toes would stay there until my follow up with junkin. They gave me additional exercises to help stretch and strengthen my leg.

Needle count 69 (1 shot of heparin & 1 shot for a blood culture)

Lumpy 2 surgery

I had surgery removing the Baker's Cyst yesterday. Dr. Junkin said that it was very big and was wrapped around a nerve and pushing against another nerve. He said that when he opened the area up, the cyst burst and he cleaned out 200 ccs of fluid and detritus hat accumulated there.


My leg is straight for the first time in weeks. I have been sleeping on and off since surgery ended due o the morphine.

NEedle count: 67 (1 IV and 1 heparin & 1 blood culture)

Surgery tomorrow

Marcy drove me to the Oncology office and I got my herceptin IV today and a shot of Lupron. Dr. Rubin said that things looked good on the CT scan and bone scan, except for 1 thing in the report. I am going to have Marcy get the cd of the images and bring it to her tomorrow, so that we will know more about how important this thing is.

Surgery is Friday (tomorrow) morning. I may be overnight at the hospital. Wish me luck!

Touch count: 22
Needle count: 64

a brief word on my sleep cycle

My sleeping is typically ridiculously sporadic. I rest often, mostly because of the painkillers. They don't make me sleep well though. Often I fall asleep for a few minutes before waking up again, especially if I'm watching movies or television. I have no idea how much I sleep in those intervals.  Because of all these nap spurts, I tend not to be tired well until after midnight. I've habitually been awake from 3am to 4am. I usually use this time to take more painkillers, use the bathroom, and go to bed (if I fell asleep on the couch). Then, I tend to wake up for the day around 8am. If I am very uncomfortable or tired, I might take another painkiller and sleep until 10am.

Anyway, last night, I magically slept from 2am until 7am. I feel amazing. I might not go back to sleep until I'm at thedoctor's appointment.

appointment-hell-day redux

Last night, I slept over my friend Marcy's beautiful house in Mt Airy. We got up early and she drove me to Hahnemann hospital for doctor-appointment-hell-day. She asked the security guard to order us a wheelchair and I took the elevator upstairs to wait for my appointment.

Dr. Junkin examined my leg again and said that the pathology report showed no signs of infection. He said that he was planning to excise the cyst on Friday. He said that I'd probably be overnight or admitted for 23 hours (an insurance thing) following surgery. He also said that the scar would be big because the cyst is so gigantic. Dr. Junkin suggested that it'd be a 2 - 4 week recovery time and said that I probably wouldn't need physical therapy, since my normal movements would probably be "enough" to strengthen the muscles again. He also said that I would be in a knee immobilizer to keep my knee straight for a few weeks. I think it is kind of funny that I haven't been able to straighten my knee for so long and now I won't be able to bend it either.

Dr. Junkin added that I'd use crutches or a walker (if the crutches irritated the scar from the sentinel node biopsy). He seemed to think I'd be put off by the walker. This year has been a sort of timewarp for me: I've lost my hair, entered menopause, walk stooped with a cane, and spend more time resting on the couch than socializing. Using a walker wouldn't be worse than any of that.

After that appointment, Marcy and I got some food in the cafeteria and ran into Maureen, the art therapist. We chatted until my next appointment, for pre-surgery screening. I answered the same 100 questions that I always do and gave a urine sample to prove once again that I'm not pregnant. The nurse got a needle to get some blood. I got a little nervous, but she had no trouble getting a vein. Yay!

We left that appointment with enough time to get a quick cup of tea and snack before my next appointment across the street. Dr Lind, my surgeon, examined my breast and said that it looked like it was healing beautifully. He pulled off the surgi-tape that was left, which left a bigger scar than I imagined. He said that it was still swollen, but would be fine in a few more weeks. Dr. Lind also examined my leg and noted the areas of numbness and swelling. He said that he's "never seen anything like that in 25 years of practice". That's not reassuring. Dr. Lind promised he'd check on me after surgery. That's very reassuring. I love that man.

After all of these appointments, Marcy brought me home and I rested. I can't take ibuprofen before surgery and I don't have any tylenol here, so my only painkilling options are Vicodin and Percoset. Mostly, I'm going to be resting and sleeping for a few hours at a time until tomorrow's appointment at noon.

needle count: 62
touch count: 21